Living a Life of Dignity and Hope: Henzo Kenya

Henzo Kenya is a patient support group made up of CML, GIST and recently added osteosarcoma patients. The need to support each other as patients inspired the great idea that is Henzo Kenya. Henzo Kenya will be ten years old next year. We have reached great milestones together.

The immediate benefit you derive by joining Henzo, which means Love in Swahili, is the flow of love from this special membership, which has the adage that “if you want to run fast, you run alone, but if you want to run for a long time, you run as a group.”

This adage reflects our true character. By bringing cancer patients together and providing the support they need not only do we play a key role in enabling them to fight the disease better, but also give them the confidence to live a life of dignity and hope.

Members of Henzo Kenya share their stories.

Educating people about these three cancers is also extremely important to Henzo Kenya, since education leads to more public awareness of the disease. A big part of our organization’s mission is ensuring patients and families have comprehensive information. Getting quality information to patients and their doctors is vital and I greatly appreciate that this organization, through its patient centered service, is spreading the word about symptoms, treatment options and various clinical trials.

We in Henzo believe instead of sitting back, we can try to help families write a different narrative about cancer – one filled with hope. We enjoy the relationships we have with people who have walked with us the same path…people who understand what it’s like to have cancer strike a family. One such organization that has greatly walked with us is The Life Raft Group. They have not only been our source of important information but they also have supported our course in ensuring that cancer patients are educated and confident.

For me, as the Chairman of Henzo Kenya, seeing my pool of volunteers give so much of their time is inspiring. The Henzo community of volunteers that we have are people I wouldn’t know if I weren’t involved with the cancer advocacy network, so it means a lot to have volunteer heroes who are making a difference for patients today and also those who will come after us.

In the month of October, Henzo Kenya organized a walk which was well attended. The main objective was to create awareness. We had a banner with three ribbons: Yellow for osteosarcoma, Orange for CML, and Purple for GIST. After the walk we converged together and had speakers who gave touching testimonies on their journey with cancer.

Management and treatment of cancer in Africa has a long way to go. Henzo Kenya has a lot to learn and achieve before we reach the optimal care a cancer patient needs.

I believe in partnerships that can help us grow and learn. We feel secure because we have partners like The LRG who have achieved a lot in this field and have vast knowledge to share with us to help us improve the lives of our cancer patients.

The Life Raft Group is a 501 (c)(3) non-profit organization (tax id: 82-0547746) providing support through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). View our 990 Form here

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International Patients

GIST knows no boundaries.
The Life Raft Group focuses on several key pillars. One of those pillars is “to increase access to effective treatments worldwide.” We aid patients from the United Kingdom to India and Kenya, helping wherever GIST patients are in need. Our patient registry staff interacts with global patients daily. The LRG Patient Registry has members from 63 countries, with country liaisons from 61 countries.
We present at international symposiums on GIST, support global advocacy issues, and work to establish alliances and collaborations. We want to ensure that GIST patients across the world have access to the best possible treatment.